The more things change, the more they remain the same.

Do neurologist offices make it a point to hire front desk personnel who just are naturally intolerant to elderly or moderately incapacitated people, or do they budget for that as manditory training?

Do physician offices have contests and give incentives for the largest number of times they can get a person to ask the same question without ever giving an answer to the actual question?

Is it part of med school to teach all of the little, fresh faced, innocent pre-doctors how to make the most of a confusing case by throwing every known unrelated test in the world at it instead of actually using a bit of critical thought and basic judgement?

Are obscure tests taught in med school, not as examples of how far we have come, but as things they should still try first just because new tests could diagnose faster and with fewer total office visits?

Does “pain management” typically end up meaning “managing to get your pain patients to go elsewhere” even when you know the pain is real and the cause genuine?

Does it feel like every time you go to the doctor, your encounters with the actual doctor become fewer and shorter?

Are you happier when the only person you interact with during an office visit is the nurse who actually did read the information you sent on your illness and actually was intrigued enough to do more googling on her own?  And don’t you hate it when she leaves for greener pastures and you have to start all over with another nurse or PA?

Have you ever felt like taking a package of hearing aid batteries to an office visit to hand your doctor when she acts as though she didn’t hear what you asked or answered?

Do doctors sometime re-order tests, not because the results were inconclusive, but because they verified a diagnosis they didn’t want to accept because it meant more work than a different result might?

Seriously.  Ever wondered?

 

 

Vacations can be vacations again.

I do realize that today, August 20, 2011, is outside of the generally accepted vacation season for most people these days.  School starts their fall semesters ever so much earlier each year.  Employers don’t want to ‘give’ any more hard-earned vacation time than they absolutely have to and try to dole it out a few days at a time.  Spouses and other significants find it more and more difficult to coordinate schedules (see above).  Add to that the late summer heat that makes it almost unbearable for mere mortals to travel, especially for those who have any sort of health issue.

But it is also the start of the “I must get [tested][diagnosed][treated][enrolled in this study] season.  With little Bucky and Kitty going off to third grade, so too are their parents trudging back to grad school, and when you have people in grad school working on research, you have Research Studies and Clinical Trials.

Oh, joy of joys!  Soon thousands of sleep deprived, white-coated supplicants at the sacred altars of Knowledge, Enlightenment, and Fifty Cent Beer Night will be scurrying about, clipboards in hand, ID badges at the ready, eager to interrogate, poke, pinch, probe, and remove the bodily fluids of willing victims Believers.  And you, too, could be among the called, the chosen, the sacrificed.  You could be a Participant!

Or you could decide after a dozen failed attempts at a diagnosis not to trust your local lab any longer with something that important, make arrangements to drive a thousand miles or more to go to a more reputable lab, and take your specimens in their “sealed, original packaging” to be deposited appropriately after you arrive.

Whatever the reason for your travel, you want to make the best of it, not only for you but also for your traveling companions.  More importantly, you want to make certain that you arrive at your destination alive and not in need of immediate hospitalization.  To help accomplish this, here are some suggestions based on my household’s experience on a mid-July 5,000 mile road trip across the northern plains, high desert, several rivers and two mountain ranges during one of the hottest Julys in 100 years.

1.  Make sure that your pain meds are easily gotten at all times.  It does not help you to have them tucked safely and securely away in your locked suit case inside a locked trunk traveling at 75 miles per hour across the South Dakota landscape at any time of the day or night.  If you are that afraid of losing your meds, carry a second smaller set in your handbag or backpack or manbag and lock the bulk of them away in your luggage.  Just make sure if you do that you refresh your mini-stash before starting the next day.

2.  Make sure that you have some sort of tranquilizer or stress relief medication with you.  We all know, often from painful personal experience, that stress can be a very powerful trigger for porphyria.  It can be a worse trigger than some medications because unlike meds that require your conscious participation to build up in your system, stress can often times be out of your control.  You cannot control a vicious thunderstorm that strikes with a vengeance at 3 am on a dark highway in Minnesota.  You cannot control the stress it causes either.

3.  Make sure you have ziplock and wet cloth cold packs in a cooler of ice so that you can get to them and swap them out as needed.   I make these to keep around the house, to take in a cooler or insulated bag, even to take out into the yard when we are doing yard work or spending outdoor time with the dogs.  They are compact enough to keep in a small cooler or soft sided bag with those blue plastic frozen ice replacements.

Use an oversized washcloth or microfiber cleaning cloth or even a cotton bar towel or hand towel.  Fold it so that when you slip it into a 1 gallon size ZipLock freezer bag, it lays flat and fills no more than the bottom half of the bag.  Try to keep it as flat and bump-free as possible so it is more comfortable to you when you use it.  Pour about a cup of water into the bag.  press all of the air you possibly can out of the bag and seal it tightly.  Lay it flat to freeze it.  Stack several of them in your cooler under a layer of ice.  Keep a few close by in the passenger compartment of your vehicle.

4.  Keep a variety of juices and Gatorade on ice. Restock it as soon as it starts to thin out.  It is so important not only to keep yourself hydrated, but to keep yourself properly hydrated with fluids that satisfy your body’s need for electrolytes and carbohydrates.  Juices and Gatorade are, for the most part, the only safe and consistent fluid carbohydrate and/or electrolyte replacements easily and inexpensively available on the road, even in the most obscure gas stations along the most desolate stretches of interstate.

They are safe for washing down your medications.  They can be kept at room temperature until you drop them into the cooler.  They travel well, even over the Continental Divide.  The best part is that you can pretty easily replenish your “back stock” by finding a grocery store and picking up an 8-pack or two (often for little more than $5 per).  Some of the big, superstore type of truck stops even have them in multiples.

5.  Keep glucose tabs with you. You might not think they have much value, but they can get you through until you can get to an ER.  Put a bottle in the glove box, in your suitcase, in your carry-bag, and have one or more of your traveling companions carry a spare.  The backpack of our household Service dog holds one.

And for goodness sake, do not be stingy with them.  One tab is not going to do anything.  In a hard-hitting, fast onset attack, you’re going to need to take them 4-6 at a time, preferably with one of the cold Gatorades you have on ice in the cooler with your coolpacks.  Glucose, Gatorade, and cool packs across the back of the neck, over the shoulders, and on the center of the chest.

6.  Keep all of the medical records you have with you.  If you have access to the disc from your last MRI or CT study, take that as well.  Put these things together in a ring binder or what we old folks called an Expanding Folio or Wallet.

Make sure you have a page with all of your doctors with their office number, answering service number, fax number, address and specialty.  Also make sure you have the same information for the hospital where you receive any treatments or have been hospitalized or tested.  It is also a very good idea to have a page of links to any porphyria-centric sites that you feel necessary for finding the information necessary for treating you properly.

And don’t count on a flash drive to be nearly as effective as hard copy files.  Most hospital IS departments won’t even allow personal data storage devices to be plugged into the hospital network, so all of the information you carry that way is completely inaccessible and worthless.  They just aren’t as effective as a dramatic device or prop, either.  You cannot whip a stack of flash drive out with a flourish, start turning pages on the blanket of your gurney, point out from the depths of your medical records exactly what you have and how to treat it, and provide them with the phone number of a nationally known specialist (if you are lucky enough to have one) who will vouch for the fact that you cannot have barbiturates to treat your “imaginary pain.”

*sarcasm off*

You only get that with Paper.

7.  Pack a carry bag.  Michael has a WWII ammo bag, a 1920 Irish Army backpack, and a leather backpack that he can keep his meds, records, and a beverage in whenever we leave the truck or hotel.  Depending on how he feels, how much he plans to carry, or how far we will be away from home, he will pick one bag or another.  Any one of these bags will carry his records, his meds, a spare small bottle of Gatorade, a bottle of glucose tabs,

8.  When you plan your route, don’t just look for hotels. Make sure you know where the major hospitals are as well.  This is pretty self-explanatory.  Most mapping websites will show the hospitals along a route with a little tweeking in the settings.  If nothing else, you can search separately and make a list to print out.

Another thing to actively search out when planning your route are easy to get to malls, pet food big box stores that welcome leashed pets (especially if they have an in-house vet), and chain grocery stores.

9.  Don’t forget your cell charger. If you can get a car charger, get one.  A car charger is much more difficult to lose than one you plug into a hotel wall outlet.  Once you have plugged it into the lighter port in your dash board, you really have no reason to unplug it and remove it from the vehicle.   The last thing you need is to be 20 miles from civilization with no charge on your phone.

10.  Keep a box of carb rich foods.  It is oh so important to ensure that you can keep your blood sugar levels at a consistent an healthy level.  Glucose tabs, as important as they are for a swift kickstart when you are dancing on the line between attack and non-attack, are not meant for healthy maintenance.  That you have to do with diet.

Fruit cups, whole grain crackers, cookies, peanut butter, even dry cereals that are easy to eat with one’s fingers. Frosted mini wheats are good for an easy food, as well cracklin oat bran.  The pieces are large enough to pick up and eat like popcorn, but they are also small enough to be easy to eat with liquids such as milk or juice.

11.  Be the passenger. Don’t add the stress of driving to your trip if you have a competent driver with you who is willing to do the driving.

Most people wouldn’t dream of offering to do a bit of relief driving for the pilot on a cross country flight.  And most people wouldn’t give a serious thought to taking over the bridge of a cruise ship.  Do the same thing while riding in the car.  If the person driving doesn’t ask for help, don’t feel all sad and upset that they don’t.  Let them enjoy the drive.  Enjoy the ride.

12.  Try to keep as closely to your normal eating/sleeping routines as you possibly can. If you do like we did and shift it 12 hours, shift the routine as well.

13.  Avoid fast food. Picking up a few easily eaten things in a grocery close to the road is so much better for your system than the convenience of a BigMac or Taco Bell.  You can easily pick up the makings of a salad, some pre-cleaned and cut fresh fruit, even a bit of steamed fish fresh from the fish counter sometimes.  Toss in a small baguette from the deli, a drink, and perhaps a sweet roll or slice of pound cake from the bakery, and you have a lovely meal.  And for goodness sakes, don’t skip meals.

it doesn’t take that long to assemble a good healthy meal from even a small grocery if you know what you’re looking for.  It certainly is quicker to put together than going through the ritual of waiting to be seated, ordering, then waiting to be served that you go through at most sit-down places.

14.  If you have a gps, make sure it has as current info as it can. If not, mapquest like a mad fool before you go and take contingencies into account. If you can’t do that, get a good atlas and learn how to read it.

15.  Don’t do like we did and do 700 miles a day. That can be too much driving for some drivers, and entirely too much time in a car for the passengers and any pets or service animals, when you are not feeling well.

If you must do your trip as quickly as possible and have no choice but to do very long days, balance that car time with some walk time.  Try to do at least 15 minutes of time outside the vehicle every two hours.  More time is even better if you can.  Balance is good. Spread it out and relax.

#8: Get a Kick-ass Partner

As a member of a few Porphyria groups on Facebook, I have encountered a diverse group of people, some of them very much individuals, others not so much.  Each of them, with the exception of the non-affected caregivers, friends and family members, deals with one or another of the porphyrias each and every day.  Some do it very well.   Others, not so well.

The fiercely individual and independent people in these groups eagerly share quite a bit of information, take responsibility for their own day-to-day lives, read everything they can get their keyboards wrapped around, and maintain a strong sense of and pride in their individuality.

But one trait you will notice in most of them is the recognition and acceptance of the fact that no one can go through porphyria alone.  Each of them has developed a strong partnership with another.  They have found a Kick-Ass Partner or a group of Kick-Ass Partners for their journey through Porphland so that someone always has someone elses’ back.

Having a partner is your best way to having someone close to you who really does have a pretty good understanding of not just the mechanics of the disease, but also of its effects on you as a person, as a living, breathing, feeling, thinking human being. 

A partner in porphyria knows about the frustration of finding a qualified doctor, much less getting that doctor to truly understand your symptoms.  He or she knows what it’s like to wake up in the night three times because you didn’t eat enough the day before and your body is demanding carbs before it lets you sleep.  He or she knows first hand those moments when the big buggy masses start buzzing around your field of vision, the ringing in your ears turns into a monsoon on a steel roof, and your gut begins to feel like an extra in the movie Alien.

He or she knows how hard it is to get coworkers to understand that just because you look perfectly fine, you are struggling to keep your arms and legs from flailing about as though you were a pinned bug.

Your Kick-Ass Partner could be in the same bed, or on the same block, in the same city, or state, or could even be thousands of miles away and only visible as a line of type and a small icon on your monitor.  He or she stands up for you when people act like fools, and stands up to you when you return the favor and play the fool.

A Kick-Ass Partner has always got your Six. 

One thing you may notice about people who have a strong, independent nature and a partner who reflects that is that they tend to be pack people, not herd people.  They may have pretty strong opinions that are not shared and they will discuss them candidly, but it doesn’t drop to the level of nonsense. 

They work for the betterment of themselves and of the pack, but not if it means blind alleigence or group-think.  You won’t find sycophants in Kick-Ass Partners.

You certainly won’t find sheep.

Sheep are tasty.  They certainly don’t make good Kick-Ass Partners.

Sugar, from the kitchen to the spa.

In my reading today, I came across the complaint that common depilitories are just not acceptable or safe for individuals with Porphyria.  And it makes perfect sense that they are not when you look at the labels on some of these products. 

Whether it is a caustic chemical that you slather on/rinse off, or a pricey, high-end boutique wax with a bone china lined, sterling silver custom heater for maintaining just the right temperature to get just the right shade of redness post-wax, these things are just jam packed with nasty, harmful ingredients that can make you miserable for days, weeks, even the rest of your life depending on the level of damage any attack leaves behind.

Is beauty worth braincells?  Are those smooth, hairless bits enough to make you endure all of that trauma?

Personally I find it a poor trade-off.  But what’s a person to do?

Try sugaring.  It’s ancient, tried and true, and has nothing in it that you, personally, didn’t put there.  You control the ingredients.  You control the outcome.

And it’s sooo hard to make and requires just a ton of equipment…not!

1.  Start with a heavy stainless steel or glass saucepan.  I have one of those glass “Visions” pans that works beautifully.  It has good, heavy sides and a heavy bottom so that the heat is distributed very evenly and consistently.  That’s important for this.  It also has a spout for pouring which makes it really convenient and much safer when handling molten sugar.

2.  Pour in your ingredients: 

• 2 Cups Sugar
• 1/4 Cup Water
• 1/4 Cup Fresh Lemon Juice

Seriously, that’s all of the ingredients.  Sure, you can make changes to that if you really want to.  You can use a little echinacea infused into the water if you want, and I’ve seen it infused with chamomille, lavender and tea tree oil in the commercially produced sugaring kits.  But for our purposes, keep the ingredients as simple, pure, and non-chemical as we can at this point.

3.  Stir over medium heat and make sure it is fully disolved.  Once it is disolved, it will slowly start to bubble. 

4.  Turn down the heat to a low setting and let is simmer very slowly until it reaches what candy makers call a Soft Ball stage.  By the time it reaches this stage, it should  be a lovely deep amber color, darker than honey bur lighter than dark maple syrup. 

For those of you who have handy dandy candy thermometers, that is 235 to 245 degrees Farenheit.  You metric folks are on your own on that conversion.  Way too many years since high school chemistry.

5.  Pour it or ladle it into very clean, very dry glass jars.  If you do it while it is very hot, it will pour  better than it would at a cooler, thicker, more stubborn temperature.    Make sure the rims on the jars are very clean.  No drips if at all possible. 

Drop on the lids, put on the rings (don’t turn them down hard, though), and let them cool a bit.  Once they are cool enough to actually grasp without glass-blowing gauntlets, tighten down the rings.

I use fabric strips for sugaring that are heavier than muslin but not quite as stiff and hard as duck/canvas.  Cotton is better than blended, and anything not natural is a bad choice for making strips.  Make at least 2 dozen (preferably 3 dozen) that are about the size of a dollar bill or a little bigger.  Don’t make them too big or you end up causing yourself more discomfort in the long run with too many do-overs. 

You should also make about a dozen or so that are about 1 inch by 4 inches for more, shall we say, precise hair removal.  Some things are just too tender and delicate for large scale deforestation.

The strips need to be rinsed well after use and hung to dry.  You really don’t want to put them through a washing machine or a dryer.  Just soak them until the sugar disolves, rinse off the hair, wring and hang to dry.  Keep them clean until you use them again.  They will last a long time if you take care of them.

WARNING!  Do not use on your pets.  Cat and Dog waxing are illegal in most areas and can result in steep fines.  Refrain from any pet waxing unless your pets are human.

And did you forget Her present?

Christmas day has come and the season has essentially passed for this year with little remaining but the clean-up, both at home and at the innumberable retailers staging sales to bring up gross profits (necessary for making payroll and purchasing merchandise for next season) and to rid their inventories of now outdated and unwanted merchandise.

It’s a festival of markdowns, a veritable carnival of cost cuts, and it extends far beyond the malls and big box stores.  Even some of the better Ebay stores are marking down the sorts of items you just cannot pick up at Walgreens or K-mart, things you rarely see on sale, much less almost in the Bargain Basement.

Want to find a few little items for yourself during this whirlwind of post-Christmas shopping?  Looking for some much needed training tools for the boy or girl?  Perhaps you want to reward them with a few new items for their special favorite activities, like a new apron for your sissy or a new harness for your bull?

And how about the household submissives among you?  Need to placate your Owner or Mistress because you dropped Her favorite coffee cup while paying closer attention to the household’s new Wii game than where the coffee table was during a serve?  Or perhaps you just want to suprise Her with a little something extra to show your appreciation for Her affection over the years?  Let me share a few ideas with you that will not cost you a ridiculous amount of money and still show Her how committed you are to Her collar and Her devotion.

Let’s start with apparel.  If you love feminine, nicely detailed, and inexpensive clothing with an exotic, lost in time look about it and a size range from Small to 5-XL, start with Ebay store “Holyclothing Exclusives” for dresses and separates.  If you have issues with Ebay, you can also find the online store at www.holyclothing.com, and they are having a great sale right now with many items as low as $7.99 for hand made tops, skirts, dresses and wrap-style pants.  You want pants that are both sexy and  comfortable?  You and your boy will love you in these.  

I can personally vouch for the quality and selection, as I have several pieces from this seller’s Ebay store.  They run a smidge big on size, and are great for taller Ladies.  And colors!  My goodness, they have colors!  You can set a lot of interesting moods by picking the right color, and basic black is just not friendly to everyone. 

How about impliments of A** Destruction?  Again I direct you to Ebay, but instead of searching for an Ebay store, you need to search for seller SM85 for a great selection of ipmliments.  I have a few that I use and love, including a nice pink and black flogger, a purple and black viper, and for the boy, an impressive heavy black collar that gives just the right headspace for dark, deep scenes.  Again, the prices are just great.  You just cannot, pardon the pun, beat these nice heavy floggers in a variety of colors for under $30.

So there’s a start.  Go forth and shop and enjoy.

Mistress Lila

An Overdue Re-Beginning

It has been entirely too long since I set thoughts and such to page, be it traditionally or electronically.  Life running a BDSM household, heading an online/realtime social group, pursuing one’s art, and trying desperately not to neglect one’s vanilla family typically is much too busy to afford one the necessary time to write a grocery list, much less anything like a blog.  This is especially true if one’s old blog were something that took hours of current event research, reading and responding to other blog pieces, and fighting the ever-present and relentless spammers that prey on blogs.

Yet with life as it is now, still as busy as it has ever been, I have found the need if not the time to write. 

I need to discuss the current state of the alternative lifestyle called BDSM and how it is increasingly losing its edge and becoming more politically correct as though it is on some misguided quest to be more acceptable to the daintier and easily offended among us.

I need to vent about the idiocy of physicians who do not research and become familiar with the chronic conditions of their patients, and in doing so endanger them with inappropriate treatments. 

I need to rant about how terribly difficult it is to find physicians, general or specialist, who have any experience in the treatment of a rare disease, Acute Intermittent Porphyria, because so few physicians have ever seen so much as a case study, much less a live patient with needs and symptoms to be addressed and managed as best as they can.

But it is not all about the negatives here, any more than it is in real life.  I would be so happy to share the wonderful stories of living with two beautiful and caring collared submissives in a close and loving household.

It would be a complete delight to describe just how incredibly satisfying it is to see that one, perfect frame, the perfect mix of light and dark and model and pose, fill the viewfinder and the very moment the shutter release is pressed.

And you cannot imagine how proud it would make this Woman to tell the world about the progress being made to give those with not just porphyria but all of the rare diseases and disorders a better quality of life, freedom from the pain and isolation, and potentially even a cure.

This may not be a daily blog as was the old one I tended for years.  I do, however, hope that it will at least be a regular part of my week, and that it may become a regular part of yours.

Be well,

Ms Lila